Young People with Dry Eye

[Amy09]

Hi everyone, I am pretty new here. I am eighteen years old and have been having problems with my eyes for about four years now. About a year ago, things got EXTREMELY bad though, and I have seen probably six doctors since then. I have been diagnosed with chronic dry eye and SLK.

Several doctors were sure I had thyroid problems or an autoimmune disorder. I have Raynaud's, muscle pain, dry eyes, and dry mouth, among a couple other symptoms that caught their attention. I had not even been aware of them (except the dry eye of course) until my doctor began asking me questions. Unfortunately, after NUMEROUS blood tests, all which have come back normal, there is still no exact cause for my problems. A reumotologist (spelling?) that I went to still seems to think I had Sjogren's, but Plaquenil has not helped.

I have tried many many perscriptions for my eyes, including a couple steroids. I even had cauterization done, which did not help at all. I am currently taking Restasis and Refresh Tears. I used to wear contacts, but can no longer stand to wear them. I have had very bad eyesight ever since I was about 6 years old and my perscription is far to strong to try the new hydroclear contacts.

This is such a frustrating health problem, mostly because I am so young. My eyes have gotten so bad, that I am no longer able to go out and do many of the things I used to. I want a job after school, but am in too much pain to do so, and I am loosing touch with my friends because I am too much pain to hang out with them most of the time. School is extremely difficult to get through because of all the pain I'm in, and no one my age seems to understand. I go to college next year and am scared that I will not be able to experience it well because of all the pain I'm in. My eyes burn so bad all the time. I feel like they have soap in them, or almost like they are severely sunburned. They are very red and bloodshot, which makes me very self concious. I get bad mucus in them, and my eyelids are very swollen and red all the time (theye also have bad problems with sticking together when I blink). I also have a foreign body sensation in my eye and sometimes it hurts to blink. The pain is so bad it gives me horrible headaches around my eyes, and I am becoming more and more sensitive to light. My eye pain also makes it difficult to sleep well. Restasis helps for a little bit, but that is about it. I know it sounds very horrible to say this, but there are times when I wish I had no eyes at all, because, even though I would be blind, I would no longer be in pain. I don't want to live the rest of my long life like this.

I hope this site will provide me with some relief to know that there are others out there who are in the same pain I am in. It would be an extreme relief if I could find someone around my age coping with the same problems. Right now I am simply struggling to take it a day at a time and rely a lot on my faith in God. I pray to God every night that things will get better. I would give anything to have my eyes be better.

[dianat]

eme hawaii,

Your story is heart-wrenching. I am so sorry you are dealing with all of these health issues at such a young age...and maddening dry eye no less. I feel for you so much, and am glad you found this site.

I'm just a struggling post-lasik dry eye patient myself. I don't know much, but I did have one idea for you. I couldn't help but think of The Boston Foundation for Sight. Please, check out this web site. They have a scleral lens that is worth checking into.

From what I understand it's a therapeutic lens for people with severely compromised eye surface problems - like Stevens-Johnsons patients who have lost vision. You can easily email them with your situation and start a dialogue with them. The lenses themselves are very expensive, but they offer it free of charge (or at least a deep discount) to those desperately in need.

http://www.bostonsight.org/

I am also curious about the hydroclear contacts you referred to. You said your Rx is too strong to try these. Assuming that wearing a contact lens will make your eyes feel better, why couldn't you wear this lens as a bandage contact and wear glasses over the contacts to correct your vision completely? Like I said, I know nothing about this stuff really, just thought it worth mentioning.

Best of luck. I will pray that you find a way to get your life back. You deserve it more than anybody else I know.

Diana

[Kyle]

Dear Hawaii,
Your e-mail made me cry. I was having a really, really bad day today and then I read your letter and my problems seemed so small. I can just feel your pain.
As Diana said, I (we) will pray for you to find some relief and some help. I don't have any answers, but I can tell you to just keep seeking help. Keep going to other doctors. As you can probably tell from this website, all of this dry eye stuff is fairly new to most drs, so you have to keep searching until you find someone who will understand and be able to help you.
Yes, I can understand when you say you simply don't want your eyes anymore. I have said the exact same words out loud to many of my friends. Although most of them have been with me through this terrible time they still look at me like I am crazy. No one feels what we feel so it's difficult for them to comprehend how awful it really is.
You know the one thing that has helped me the most during this painful part of my life...this website! To be able to get on it every day and talk to people who really, really know what I am feeling and talking about has been wonderful. These folks have been a WEALTH of information..more than any doctor has been yet. I know if you need to lean on them (us)...we will all be here to help you. Sometimes it really does help just to know someone knows what you are going through.
Hang in there and I promise to keep you in my prayers tonight.
Take care,
Kyle

[jjzhao2468]

Ii understand you

I also want to remove my eyes sometimes. It is very painful and it drive me crazy and am not able to do anything except trying to kill myself. I have severe dry eyes and MGD. Doxycycline helps me a lot.

this website is a hope for me.

Dear Hawaii,
Your e-mail made me cry. I was having a really, really bad day today and then I read your letter and my problems seemed so small. I can just feel your pain.
As Diana said, I (we) will pray for you to find some relief and some help. I don't have any answers, but I can tell you to just keep seeking help. Keep going to other doctors. As you can probably tell from this website, all of this dry eye stuff is fairly new to most drs, so you have to keep searching until you find someone who will understand and be able to help you.
Yes, I can understand when you say you simply don't want your eyes anymore. I have said the exact same words out loud to many of my friends. Although most of them have been with me through this terrible time they still look at me like I am crazy. No one feels what we feel so it's difficult for them to comprehend how awful it really is.
You know the one thing that has helped me the most during this painful part of my life...this website! To be able to get on it every day and talk to people who really, really know what I am feeling and talking about has been wonderful. These folks have been a WEALTH of information..more than any doctor has been yet. I know if you need to lean on them (us)...we will all be here to help you. Sometimes it really does help just to know someone knows what you are going through.
Hang in there and I promise to keep you in my prayers tonight.
Take care,
Kyle

[Rebecca Petris]

I also want to remove my eyes sometimes. It is very painful and it drive me crazy and am not able to do anything except trying to kill myself.

Many patients do reach this level of despair. Chronic pain, especially from something other people don't see or understand, can really send you. Most people have no idea how disabling dry eye (and related conditions) can be when it's really severe. I am so sorry you're having such a hard time. I hope you're discussing that with your doctor too? Suicidal thoughts are something that really, really should trigger a visit to the doc to discuss it. Many dry eye patients take antidepressant medication to help cope during the tough periods. I'm not suggesting that's for you, but I'm just trying to say that I care and hope you're getting all the support (medical and personal) that you need.

[Kyle]

Dear Hawaii

One other thing I thought of last night after I wrote you and then went to bed was this.....you are only 18 years old. The odds of them finding a cure for your condition in your life time is very, very high. Try to think of it that way. Medical answers are coming every single day. I really encourage you to read all the other threads on this site as well. Eric, Diana, Rebecca...all are incredibly knowledgeable about all of this stuff. They are testing and researching new products all the time. That is so encouraging for me..and should be for you as well.
I agree with Rebecca...it is so difficult for others to understand what we are going through and that makes it all the harder. But please know WE do know how you feel and we can completely listen and try to help you.
I would encourage you to go and talk to a psych too. Sometimes just talking or perhaps taking medicine to get you through this will ease the pain a little.
One other thing, when I first got on this website everyone on it kept telling me to take it "one day at a time". I too would get completely depressed when I started to envision a lifetime of my eyes being this way. Every time I have a bad day though I do stop and take a deep breath and say to myself..."I just need to get through today..tomorrow will be better". It helps.
Please take care of yourself.
Kyle

[Amy09]

It's me again...

Hey everyone, it's me again. My name is Amy just to let everyone know. Thank you so much for your support, and it really helps to know there are others out there who are somewhat in the same boat I am in.

I go back to my eye specialist in a little over a couple weeks and am going to bring him some information about the scleral lenses. I actually just heard of them about a month ago and have been looking into it. They seem like they might help a lot, but I have to convince my doctor to let me try them.

My doctor also has me scheduled to get botox done on my eyelids. I have no idea how that is supposed to help, but apparently it will decrease the swelling in my eyelids, or something along those lines. Has anyone out there had anything like this done?

Thank you again for everyone's kind words.

[Cindy]

Comfort measures

Hey everyone, it's me again. My name is Amy just to let everyone know. Thank you so much for your support, and it really helps to know there are others out there who are somewhat in the same boat I am in.

I go back to my eye specialist in a little over a couple weeks and am going to bring him some information about the scleral lenses. I actually just heard of them about a month ago and have been looking into it. They seem like they might help a lot, but I have to convince my doctor to let me try them.

My doctor also has me scheduled to get botox done on my eyelids. I have no idea how that is supposed to help, but apparently it will decrease the swelling in my eyelids, or something along those lines. Has anyone out there had anything like this done?

Thank you again for everyone's kind words.

Hi Amy! Bless your heart for finding us and posting about your dry eye problems. I don't know anything about the botox your doctor has recommended but please keep us updated. We all learn from each other. I'd like to say a little something about the variety of dry eye comfort measures we use to help us get through the day. So far, there is no cure for dry eye but there are so many things we can do to manage the discomfort. Warm compresses, cold compresses, drops, lid scrubs and massages, sleep masks, vitamins, Omega-3 oils, goggles (not as bad or ugly as they must sound to an 18-year-old), gels, ointments, cyclosporine and anti-biotic drops, humidifiers...there are many options and configurations of comfort measures that will help you do the things you want to do.

There is a long list of comfort measures so finding *something* (or many somethings) that will give you some relief is quite possible and there are many people here who will help you wade through it so you can live your life as comfortably as possible.

[Jeff]

Amy,
I too am sorry for you situation. My heart goes out to you. I agree with Diana the Boston Foundation for sight would be a good contact. The people there are very understanding and deal with difficult eye problems everyday. I have a couple of phone numbers (781) 726-7333 or (781) 726-7337. Perhaps one of your Drs. could learn more about this if he contacted them. You have many kind and understanding friends here.
Jeff

[adam-85]

hi eme_hawaii,

im a 19 year old, male! i also suffer from dry eyes. more specifically meibomian gland dysfunction / blepharitis / conjunctivechalassis i think.
i have had problems for a year since i was 18 and life has been very debilitating. i have seen 2 doctors, 8 eye doctors and have had homeopathic treatment. i have tried everything, steroids, lots of lubricants, flaxseed oil, NAC supplement, oxytetracycline, eye massages, eye lid cleaning with baby shampoo and tea tree shampoo and oil, humidifier, warm compresses... almost everything. my sysmptons are constant burning, aching, sometimes dry, sometimes foreign body sensation and redness, all of which worsen towards the end of the day. i do not have aqueous tear defiency and i have a wrinkled conjunctiva (which i think is the cause of all my problems since that was the first thing i noticed).

i am now turning to acupuncture, which i heard is good for aqueous tear defiency problems and id advice you give it a try!... its nice to know that theres someone out there as well as me of my age. your the first person i have found who is of similar age! ive been doing a lot of research on the internet and on boards such as this new one to try and help me find an answer to help me. im always actively trying to do something to improve my symptons, i know its only been a year and some people have been suffering a lot longer! i am hoping that this acupuncture which im going for in about 3 weeks or so will help my symptons, i think that it will relief the irritation slightly... anyway if that doesn't work i may have an amniotic membrane transplant which i could have done, because i do have a wrinkled conjunctiva, where i think all my problems have risen from since it was the first thing i noticed wrong with my eyes, as well as redness! in january i got so frustrated with everybody i had seen here in england, so i flew over to miami to see a doctor over there.

anyway, i feel for you! its so hard, especially at a young age, im at university, and am not wanting a job when i leave because of my symptons! its so hard to study with and its just ruining my life basically. i hope all goes well with you, let me know how you get on!

all the best,

adam

[Kyle]

Hey Adam,
I just read your response to Amy and I wanted to ask if you would mind updating us on your experience with the acupunture. I have had many, many people tell me I should try it for my symptoms too, but I can't afford it and I don't have insurance. I have some of the same symptoms you have (blepharitis, glands not working properly, dry eyes, burning, etc..) and I have tried everything to fix myself too.
I had lasik 4 months ago, so my symptoms are fairly new, but I would be really interested to see how it worked for you. Perhaps you could post it under a new thread too ("Acupunture"), so we could easily spot it.
Thanks so much!
Good luck!!!!!!

[adam-85]

hi hyle,

i haven't been for acupuncture yet, but will do in 3 weeks! i will be sure to let people know how i can get on and how it helped me if it does in any way!

adam

[Mr_Cabot]

Acupuncture

I have been taking acupuncture treatments for about 6 months now. I usually go once every two weeks. The first Dr was very expensive, $200 per visit, and each session was 1/2hr. After 3 sessions it was too expensive and I found another guy who was $30 per session if you had insurance. He is nice and explains target areas and the ways of TCM (traditional chinese medicine).

Overall I like the experience, each session is about 30 minutes and I usually fall asleep each time. The whole idea is to get fluids up to my eyes. He believes it is a kidney deficiency leading to the problem. Also possible that when I had lasik the energy from the laser got stuck in my eye. He explained the bodies response to things such as laser and believes its possible. I also told him I could have blepharitis and MGD.

Is acupuncture solving my dry eye problem. No I dont think so, I although I am told it may take time and I have to believe it. He says if I can feel good one day, then it is possible to feel good for 2 days, etc, etc....What I believe is that the treatments are providing my body with a better overall flow of fluids, and myself with a more positive outlook. This helps as at times I think I obsess over my eyes and actually evoke dryness and irritation via stress.

I would recommend acupuncture. I also would shop around if you have insurance. Most insurance companies cover altenative medicines such as this, and they should be able to provide you with a list.

[Lucy]

Insurance and acupuncture

I would recommend acupuncture. I also would shop around if you have insurance. Most insurance companies cover altenative medicines such as this, and they should be able to provide you with a list.

You should definitely check on your insurance to see if acupuncture is covered as Mr. Cabot says. However, I can say he must live in a different region than me. Acupuncture is rarely ever covered by insurance here in the midwest. As the price of insurance goes up, the more it tends to avoid coverage for alternative approaches.

[Mr_Cabot]

Acupuncturists - Where?

Lucy is correct. Finding the acupuncturists that participate in insurance plans are not too plentiful. Mine is about 45 minutes from my house, but fortunately only 20 from my office. I live in the Northeast.

I did a quick check of my insurance company and there coverage for alternative medicines in the Midwest. There are no participating acupuncturists in Iowa or Wisconsin, but there are a handful in Illinois, Indiana, Michigan, and Missouri. Hopefully anyone interested in acupuncture has insurance and can locate on an acupuncturist that participates. The rates are fixed with my insurance company and rates are decent at $30 per session.

If you do opt for acupuncture, be careful of Bladder 1 location if you have any big gatherings in the future. It is directly above the inside eyelid and occasionally leaves you with a big black eye. I tend to think however that if a tiny needle caused such a black eye, maybe there was something there that needed to get released...wishful thinking. Good Luck